I really didn´t start this blog with the intention of it being all about cancer but the fact is, right now, this is what my life is about. It won´t always be that way but at this precise point in time my days and weeks are very much measured in terms of which treatment and how much longer. It follows that I should do the mandatory ´how did you get here´ bit because everyone wants to know, I know this because no one is shy about asking. This is a GOOD THING in case that made it sound like it wasn´t. I have colon cancer and it is a fact that people are squeamish about talking about ´bottom trouble´ ´dodgy tummies´ or my own personal euphemism ´digestive issues´. So if telling people how it happened to me makes them more proactive about their own health then all the better.
When I was first diagnosed I recounted this story more times than I can count and could reel off the timeline of events from memory. Now I have to think a little. It all happened so gradually, so much that when I finally got a diagnosis and mentioned to people that symptoms had started a year earlier many were horrified I had waited so long. But it only seems obvious in retrospect. Towards the end of last summer, out of the blue, I started getting the famous ´dodgy tummy´. It was nothing specific to start, suddenly needing to rush to the loo urgently maybe once a day, once every couple of days. Periods of feeling bloated, more gassy, things that had never happened to me. I started identifying with all these adverts aimed at women that tell us to eat more probiotic yoghurts or take certain digestive aids to help with The Bloat. Previously I had found these adverts completely alien and irrelevant. Who were all these women with dodgy digestive systems? Why didn´t it happen to men? So I assumed I had suddenly, at 37, hit some kind of hormonal change and joined this new sisterhood.
I vaguely debated going to the doctor but I felt sure it would be a waste of time, that I would be dismissed with vague suggestions of IBS and offers of vouchers for yoghurt. And so the summer turned to autumn turned to winter and the symptoms increased a bit, but still really vague.
At this point I feel like I have to apologise. I wish I could tell you one day I woke up pooing blood, rushed to AE and was diagnosed. Something nice and clear for you to note down as a big red flag. But I can´t. It was months and months of just feeling like my tummy or something in my whole digestive process just wasn´t quite right. I went on holiday over Christmas for 3 weeks and had a great time, I felt quite bloated still but also put away a terrifying amount of amazing food so had a sneaking suspicion that the ´bloat´ was actually me just getting chubby. I don´t think I was entirely wrong either, putting on a stunning 3kgs in 3 weeks! (The food was AMAZING)
I finally went to see the GP in February with little hope of any real help but thinking it would be good to have a starting note in my file to keep track of progression if it did get worse (HA!). As expected he made vague comments about IBS and raised a request for a colonoscopy, telling me it should be around 3 months´ wait. At this time I was getting fit, my weight gain on holiday spurring me on to try a fitness programme I had read a lot about, Kayla Itsine´s Bikini Body Guide. It is not for the faint hearted but it gave me small (30 minute) chunks of almost daily exercise and totally fit in with my schedule. The initial programme runs for 12 weeks and I started in January. I completed 18 weeks of the programme and was loving it, seeing amazing changes in my body, trying to convince friends to join me. This is worth noting because it is important you realise that I was not wasting away or having symptoms that were crazy worrying. I was working, looking after my kids, exercising daily, until about June.
During this time it was all VERY SLOWLY getting worse, the running to the loo, occasional spotting of blood (“probably haemorrhoids” said the doc, although I have never been examined for them and certainly never suspected I had them) and eventually by around the beginning of June feeling increasingly tired and wiped out. I did visit the doctor a couple of times more during these months, including a visit to A&E one weekend when I had a worrying amount of blood, but each time I was effectively told he could do nothing more, he had put in the petition and we had to wait even as I explained worsening symptoms including fatigue, increasing blood “hemorroids”, losing weight “a few kilos isn´t significant”, increasing urgency combined with period of constipation. By may I could be alternating periods of lying on the sofa totally listless with rushing to the bathroom up to 15 times a day and a couple of fun new symptoms had put in an appearance: waking at night and hurtling out of bed in the direction of the bathroom up to 4 times a night and ´tenesmus´ which is particularly uncomfortable and is a feeling like you really have to poo when there is nothing there. It is not dissimilar to early labour contractions. In your bum. I had also started noticing a weird sensation of ´hanging´ low down in my pelvic floor and began to think maybe all the exercise was to blame. Maybe it was too much for me, it was designed for 20-40 year olds, maybe my post partum bod (and pelvic floor) were no longer made for all this jumping around. I asked the doctor whether I could be suffering a slight prolapse and he referred me to the midwife across the hall who declared it nothing worse than a desperate need for intense pelvic floor rehabilitation exercises. So we carried on.
By May I was expecting a call for the colonoscopy and when I didn´t hear I called them and was told it would be at least 3 more months. Still my doctor said he could do nothing. I burst into tears, feeling increasingly frustrated at the lack of interest in my case or action to do anything about it. I had even asked if they could refer me to a dietician in the meantime to see if diet changes could help and was as a result referred to the nurse next door who handed me a pamphlet sponsored by Danone telling me to eat plenty of fibre, fruit and vegetables. Yeah, thanks for that. Stellar advice.
My aunt died of colon cancer in her early 50s and my mother had polyps removed as a result of her own subsequent checks. I told my doctor this. At every appointment I mentioned this and it was dismissed. I told him – I TOLD HIM – “I am 37, I have two young children, I don´t want to be one of these tragic cases you read about in the paper” and he said, calmly, “it happens, people do die waiting for treatment” but the whole time his perspective was “you are young, colon cancer does not happen to people your age”. Guys. That is just not true. Even I knew then that was not true. He suggested trying A&E again to see if they could speed up a referral. I rang my husband in tears telling him “I feel like something is really wrong and no one is doing anything to help”. I didn´t really suspect cancer but whatever it was the symptoms were becoming unbearable. It was all I talked about with friends. When my boss called I couldn´t help telling her how tired and run down I was. In all this time my doctor did not lay one hand on me to check my abdomen or for haemorrhoids, nothing. The first visit to A&E ended with a doctor (who did at least palpate my abdomen and ask more pertinent questions about my symptoms) telling me that if I wasn´t dragging myself into hospital bleeding to death there was nothing she could do for me. The feeling of impotence was overwhelming.
The second visit in A&E seemed a bit more productive, the doctor suspected Ulcerative Colitis but yet again was apparently powerless to do more than pass a letter to the Digestive Specialist requesting a faster track appointment. When two more weeks passed with no word my husband finally, frustrated and worried, insisted we visit a private doctor. As it turns out it was the same Digestive Specialist that worked in the state sector. He also suspected Ulcerative Colitis and scheduled a colonoscopy for a week later. Which is when things got.. interesting. I have to leave the rest for another day because this is turning into an essay and meanwhile my kids are downstairs and their rough and tumble fun sounds like it might turn sour at any moment. Life calls.